Are Caregivers Victims of Moral Injury?
Alzheimer’s disease currently affects a reported 5.4 million people in the United States and 44 million worldwide. But there are also 15 million caregivers, just like me, who are unintended victims and not among the official count. Add to our legions those caring for loved ones with stroke, diabetes, post-traumatic stress, or depression and complicated by a memory disorder. We speak the same language on the front lines of care. The intensity of providing care over years and our 24/7 hyper-vigilance puts our own health and emotional wellbeing in harm’s way. Does that qualify as moral injury? Hear me out because I never considered this issue when writing my book, “Slow Dancing With A Stranger: Lost and Found in the Age of Alzheimer’s” (excerpted in italics).
I am his wife, co-pilot and guardian. This once intelligent man has lost his navigational compass. All social filters have been stripped away; the improprieties embarrassing, frightening and explosive. Like clues to the Da Vinci Code, I search and pick up hints he drops while fearing my own safety. A nervous body tick means he needs the bathroom. His eyes are closed, but I take no chances; a clenched fist is an alert I need to find a safe zone. I am in pain for and with him; a suspended state of self-preservation, a discipline hard-learned over years by living intimately in the disease.Hope in the hopelessness of his disease forces me to modulate my metrics for success. I declare small victories at the end of every day so I can meet the next crisis to blindside me with resolve.
Please tell me: Am I in denial about moral injury? Are the wounds I bear self-inflicted—the result of both choice and forgetting that I matter too?
First and foremost, it is my instinctive and chosen mission to protect his dignity. His illness is not contagious, but our universe of friends has evaporated as if the plague has visited our door. The person they knew is lost, but not gone. Our isolation is our intimacy. I live in the disease with him, fill in the blanks, calm his adrenalin-fueled rage, and pretend that his fate and our life together are not doomed. Unfortunately, I know better.
No one should be surprised by this conundrum. Caregivers are invisible to the medical and faith-based communities, even though our own health is being compromised in our service to others. Have our faith leaders not been adequately trained or do they lack the time to minister to individuals and their families around such an open-ended and unrelenting disease like Alzheimer’s?
There is also the unwelcome paternalism of the medical profession. Fifty-five percent of those living with the disease go undiagnosed. Many clinicians miss the symptoms, too often dismiss a family’s concern, or consciously prefer not to diagnose to avoid depressing their patients.
Doctors were the ones who kept telling me privately that my husband couldn’t last long. Their words strengthened my resolve to see him through to the end. More than two decades later, closure still seems far away.
More than 75 percent of families try to keep a loved one at home. Is that an expression of traditional values or the economics of necessity? Either way, no one can be prepared for the enigma of dementing diseases that challenge families in unimaginable ways.
I am now in my 22nd year caring for both my husband and mother at home. I used to think of myself as the well spouse, but now I realize this isn’t the case. My vulnerabilities are great. When people hear my story, they sometimes tell me they wouldn’t make the same choices. I do not hold myself up as an example to follow. No one who has been on the front lines of care ever questions when someone says, “I can’t do it anymore.” On the other hand, “No one deserves to be forgotten in life because their disease is without hope.”
Interlocking systems of indifference in America, compounded by stigma and the politics of ageism, represent the current state of affairs for those living with Alzheimer’s and their caregivers. We know this all too well as the healthcare debate rages on and prompts fundamental questions around the issue of “do no harm.” But how well do the social norms and our health care system accommodate change of status—from well and productive, to mild cognitive impairment, and through later-stage disease progression that may take from three to 20 years? Does society’s reaction to getting old with Alzheimer’s count as moral injury? It is in the detail of our lives, and the very personal online exchanges, that lay bare the moral dilemma.
From an e-mail exchange with a friend:
“I was surprised at dinner when you asked me, ‘Do you take care of your husband out or love or a sense of responsibility?’ Let me just say that I love my husband, but I have cared for him all these years with the unconditional love one gives a sick child. Alzheimer's is confounding and cruel. Savor whatever is left of life together with your lovely wife. Please feel free to ask me anything.”
His reply: “Excuse my blunt question. It is a question I struggle with myself, which is why I ask. The woman I live with is becoming less and less the woman I fell in love with and married. How must my relationship evolve? I asked you because you have had almost three times longer to think about it. I also asked you because I believe you will tell me what is real, not what is ‘correct.’ Your parallel with a child resonates with me."
"I have felt I have a child, whom I can never neglect, that gets younger every year and so needs more and more help, a child in reverse.”
Is it the stigma of this disease that marginalizes and sequesters us behind closed doors? New research shows that empathy shuts down if you believe someone is responsible for their own suffering. We must be careful not to insult our parent’s generation by inferring that lifestyle changes might have saved them. We did not choose Alzheimer’s. The disease attacked my husband’s brain and our entire family became its victim too.
Studies have shown that caring for a person with dementia causes more severe health effects, physical and psychological, than other types of caregiving. The greatest fear for many caregivers is that if we break down from physical or mental stress, there is no Plan B. There is no buffer between an infirmed or burnt out AD caregiver and institutional care for a loved one.
A fellow advocate, caring for a wife with early-onset Alzheimer’s, writes: “I confess that I was not familiar with the term ‘moral injury.’ There is certainly an overlap of symptoms. I ask myself whether moral injury resulted from my ten years of caregiving or by my recent decision to put my own life first despite the courage of my wife as she struggles with her disease, the kindness to others that she still can demonstrate, or the smile on her face when I come home. I am still a huge presence in what is left of her life even as she becomes a less and less significant part of mine. Will my efforts to reinvigorate my own life leave me scarred by moral injury? My own kids said they could see how quickly I was deteriorating because of stress and lack of sleep. They respected my choice to care for my wife but argued that I was sacrificing my life. Will it be better or worse for her daughter who has made it clear that she will institutionalize her mother if something happens to me? There is a clear moral dilemma for caregivers. Aren’t we morally injured no matter which choice we make?”
Although we often focus on moral injury as something that occurs in military combat, it is said to be a much broader phenomenon that may follow any severe trauma as it undermines not only the individual, but familial and intergenerational bonds.
Am I blind to “moral injury” because I see no way out unless I declare defeat?
Every day I ask myself if I am doing anything that makes a difference. The reality is that no matter what I do, Alzheimer’s will win out at home.
There is nothing irrational about our fear. Our fear matches the facts. There is no cure for Alzheimer’s and after 100 years, no disease modifying therapeutics. What rescued earlier generations is that they died of other diseases first.
Is it any different for military caregivers, whose average age is 26, and who cope with the trauma and ravages of war that may cloud their lives for the foreseeable future? At the hospital, I approach a young man on a gurney, minus both arms and legs, being pushed by his wife, to thank them for service to our country and devotion to each other. My words seem wholly inadequate and their sacrifice unbearable.
Quite frankly, there is no time to see ourselves as victims. Even those who announce defiantly to the world that they have early-onset Alzheimer’s are sooner or later marginalized professionally and socially. As advocates, we do battle with Medicaid and Medicare because no long-term care is covered unless you bankrupt or divorce your spouse. We speak out for women who are two-thirds the victims and two-thirds the caregivers. Through the pain of our lived experiences, we form advocacy networks for African American and Latino minorities who will be the new majority of the future and reach out to work with the military on the needs of veterans now living with Alzheimer’s and dementia.
I worry that people will be offended by my honesty about this disease. I don’t think I have done anything that other caregivers haven’t done for family and friends they love—though perhaps I have done it longer. But I claim no special expertise, and I refuse to pretend that my way is the right way.
When friends and family demand to know if my husband would have done the same for me, I can never easily answer them. Who among us can know with certainty how we will act until we are in the middle of things? I imagine he would have done whatever he could to get me the best medical attention and put me into the right pharmaceutical trials. But would he have abandoned his career to take care of me, bathe me, diaper me, dress me, feed me, cater to my every demand and personal need? I doubt it, nor quite frankly, would I want it. The real question isn’t what Harvey might have done. It is: what I do I feel compelled to do as a loving and responsible human being?
Unfortunately, there are no road maps for survival. And that is how days slip into months, and months into years. I suffer no guilt, but that sensibility comes at an exorbitant personal price. Friends tried to rescue me, but I was too numb to hear and tired of defending my decision. Is it too late?
When I look in the mirror, I see only exhaustion and more than two decades lost. After all that has happened, and given the unknowns that lie ahead, I am still not sure that I could, or even would, have done things any differently.
Objectively, we are all at risk and potential victims —first, of the mind-wasting cruelty of the disease itself and, second, of societal failure to adequately respond to the breadth of the global Alzheimer's crisis. We are forced into a de facto moral dilemma “to care or not to care.” Personally, it feels out of character and self-defeating for me to openly declare “moral injury,” but I will own being a victim because I have chosen to be an advocate and that has made me fearless.
Meryl Comer is president of the Geoffrey Beene Foundation Alzheimer’s Initiative and co-founder of WomenAgainstAlzheimer’s.